The Last Few Years

It feels funny to write that title. I can hardly believe that it has been years since I have been on my blog. This used to be a refuge for me, and I took comfort in the ability to write about my illness, infertility, and life in general. Then, my daughter was born, my sister passed away, and life became hard, busy, and sometimes quite depressing. 

Over the last few years, I've struggled with such varying feelings. I have felt the very lows of depression and anxiety where I have been unable to leave the house, and I have felt the immense highs that occur as you watch your beautiful child accomplish something new or give you the biggest hug as she tells you she loves you more than anything. In truth, even with all of the high moments my daughter has given me, the last few years have been downright hard. 

My sister lost her battle with cancer at the end of December in 2014. It has now been three years since I last held her hand, hugged her, or heard her contagious laughter as it filled a room. The first two years, I felt like a zombie moving through the motions as I learned how to somehow cope with her absence in my life. Over the last few months, I've finally just now begun to really feel like my "old self" again. I still have my days when I feel the sadness of loss overwhelm me, but they are few and farther between than they have been, and while a part of me feels angry that I'm allowing myself to feel happiness, I also know that my sister wouldn't want me to live my life sad. So I've been pushing forward, and the one thing that has kept me grounded is my beautiful little girl.

My daughter, Sydney, is now almost 5. She'll turn 5 next month, and she is beyond excited to celebrate her birthday with a My Little Pony theme. She is so intelligent, one of the kindest kids I've ever met, and so very sweet to others. She's also quite smart, and has a great sense of humor. I know I'm biased, but she's pretty darn amazing. She's currently in her second year of preschool, and her teachers have said that they will be so sad to see her go to kindergarten next year. She's ready though. She knows all her letters, and she is even reading and writing some words. I'm amazed by how much she has learned. She is the light of my life, and I'm so blessed to have her.

Two years ago now, we were actually pregnant with a second baby. We were both so excited and we couldn't wait to have a sibling for our little girl, but sadly I had a miscarriage just shy of twelve weeks. It was another blow that led me into a worsened state of depression and anxiety as I learned how to accept the loss of our baby and move on again. We had everything set up to try and carry another child yet again, but sadly, in November of last year I wound up hospitalized, and it changed the game for us. 

Last year, Sydney brought home every germ imaginable as she triumphed through her first year of preschool. Everything she brought home, I managed to catch, and before I knew it, I was really struggling. My CF team and I made the decision together that it was time to call in reinforcements and I received my first hospitalization in 12 years and my first round of IV antibiotics in 8 years. It was hard for me to mentally accept, but I knew I was doing what was best for my health.

During my hospitalization, I wound up doing 3 different IV meds. At first it was Merepenum, Tobi, and Vanco. I then ended up culturing C. Diff. while in hospital, and the IV meds were changed from Merepenum to Zosyn. It did help my lung function and my energy as these drugs kicked in and took care of the high levels of pseudo and MRSA I was carrying, and before too long I was sent home on a PICC with a home health care nurse coming out to help me.

The very first night I was home, the home health care nurse came and set up a schedule for me to do my drugs. She then gave me IV Tobi, even though I had already had my one dose for the day, 10 hours prior. Shortly after, I started feeling very odd and different. I called my team and they suggested I might be dehydrated so I chugged gatorade and rested, only to feel worse a little later. They then suggested I head into the hospital again to be checked out. As blood tests came back, we found out I was in kidney failure. I had been given two doses of Tobi in one day, when I should have been given one, and it was too much for my body. I was then readmitted to the hospital to sit and wait until my kidney levels bounced back. The doctors were shocked, as it took nearly a week before we saw them start to drop. 

I made it out of the hospital just before Thanksgiving, but the doctors told me that it was no longer wise for me to carry another child. With the CF, the diabetes, and now damaged kidneys (they did bounce back, but pregnancy is hard on the kidneys and mine have taken a big hit now), it was simply too risky. Obviously, I have a beautiful daughter, and I can't risk not being here for her to try and have another child. This also was a huge hit to my mental health as I struggled with the depression of never carrying another child again. 

The last year, thankfully, has been a much better year. While we did manage to pass around EVERY sickness again this year, including Influenza A (it was TERRIBLE), I managed to stay healthy and out of the hospital. I haven't even had a course of oral antibiotics this year (knock on wood). I would say that the biggest reason for this has to be my improvement when I started the new CF drug, Orkambi. Once we knew that I couldn't carry a child anymore, we immediately started me on Orkambi as we had held off only due to pregnancy. It was a game changer for me. I handled illnesses so much better, and I saw a 6% increase in PFTs. My last FEV1 was 82%. Unfortunately, I did have a lot of side effects from Orkambi. Higher blood pressure, higher blood sugars, increased depression and anxiety, horrific GI issues where I'd be in the bathroom 8-10 times a day, and issues with ovarian cysts (I have to have surgery this coming summer to get rid of them). It was worth ALL of those issues to be able to breathe better and handle illnesses better, but it was a host of rough side effects. 

A week ago, I made the transition from Orkambi to Symdeko. I'm now 8 days in, and while the first week was quite rough, I'm doing better now. At first, I experienced a lot of shortness of breath and a horrible headache that lasted around the clock for days, but now I'm feeling really pretty good. I have more energy than I did on Orkambi, and for the first time in a year, I'm only going to the bathroom 1-2 times a day! I'm hoping the positives of this drug keep up. We'll see what happens as it continues, and I'm curious to see how it impacts my lung function, but I'm hopeful. 

<3 

Wow.

It has been 3.5 years since I last posted. I can hardly believe time has passed like it has. Once my daughter arrived, I lost time for my blog and honestly forgot about it for quite some time. This morning, on my way from dropping Syd off at preschool, I thought about it again. I decided to jump on and see how people are doing.

I’ll have to sit down, update fully, and really explain my life these past few years, but for now I’m just happy to visit this site again and read posts from some dear friends. ❤️

Misbehaving Lungs and New Ideas

Two posts within a month?! Look at me go!

My lungs decided that since I told everyone in writing that they were behaving well, they were going to prove they still control things this week. Go figure. I'm currently nebbing some albuterol and hyper-sal while hoping to get some exercise in to get things moving this morning. My chest is super congested, and if I'm not better by tomorrow then I'm calling in some reinforcements (aka oral antibiotics). I don't want to leave it til the weekend where it's harder to get in touch with my care team.

On a happier and more exciting note, I have started working on my new book idea. Technically, that's nothing new for me as I tend to start a lot of books. I even get to the middle usually with my book ideas before they fizzle apart and get stored in a folder of "come back to in another 20 years or so" projects. This usually happens because I'm not sure where to go past the middle or the climax. I am terrible at wrapping the loose strings up together in a nice, neat package, and it results in many failed attempts. I still marvel at authors who appear to create endings so seamlessly. I'm not one and never will be, I'm afraid.

This time, however, I actually have the ending already figured out. I know every party of where this story will go, and while I will not hold my characters to following this preconceived timeline of events, I also will be able to guide them along to the finish line should I need to do so.  I'm pretty excited about that fact. I think this may end up being the first novel I actually finish, and it's in a different genre than I usually write as well which is also exciting. Stepping out of my comfort zone in two different ways will hopefully prove more successful than my previous efforts. I usually love to write fantasy and dystopian lit, but this time around I chose realistic fiction. It will still be a YA story, and to me that's important. I feel YA stories allow for more growth and emotion in the characters without it seeming like unusual behavior. Growth, change, and out-of-character behavior is exactly what happens during the teenage years, and it makes for great emotional writing.

With that, I'll sign off of here and keep working on my protagonist and detailing my outline a bit more.

Wishing you all a peaceful and blessed Christmas week!

Still Doing Well

I know I have been quite sporadic when it comes to blog posts, and it has been far too long since I have shared anything. To be honest, life has been quite crazy around here, and the time for me to blog is quite limited to even non-existent. I'm trying to make a commitment to myself to update once a month at least, even if it is very brief. I have received several e-mails in the past few months asking if I am okay because readers worry when a CFer goes dormant on a blog for awhile. I appreciate their kindness, and I don't want to worry anyone so I plan on holding myself to this goal as much as I can.

With that said, there isn't much going on CF wise for me which is a fantastic thing to be able to write. I pray it stays that way each and every day. I am now almost 19 months out from having my first child, and my lung function has remained stable around 83%. There are days when I am better at getting treatments in than others, but for the most part I am quite compliant. When I miss a treatment, I work hard on adding one the next day or even in the middle of the night. Some days are easier than others to achieve this, but 100% compliance is a goal I consistently strive to achieve. I attribute my good health to my consistency, my great CF team, luck, good hand washing, and having a very active 1 1/2 year old.

Yes, the light of my life keeps me on my toes day in and day out. She is loud, opinionated, stubborn, generous, loving, kind, and incredible. She has the best personality, and while the traits above can be quite challenging, I also love seeing her testing boundaries and pushing limits. She is becoming her own person, and it's the greatest joy in the world to watch. We are still struggling with a dairy allergy, but we hope she will outgrow it as time goes on. She is a tiny peanut and most people can hardly believe she is even one because of her size. She's our little love, and that is just fine with me! Sydney's favorite activities right now are reading and doing puzzles. We spend hours each day working on different puzzles and reading dozens of books, and I can't tell you how much it warms my heart to see her love both. We try to limit TV time to just when I am doing my treatments, and we are pretty particular about what she watches. Right now the only actual show we allow is Daniel Tiger. I love that it teaches morals and skills on managing emotions. Hopefully as she grows we will continue to limit TV time as we are now.

18 month photos and Christmas photos as well.

Turning the corner to a harder topic, I wanted to update those of you who have been following my sister's journey with Stage IV colon cancer as well. In the last month, she has started with hospice care. She is at home, and we continue to enjoy many days with her as we make new memories and relive older ones together. She ran out of treatment options as each chemo quit working, and her liver was too damaged to pursue clinical trials. It was and still is a hard mountain to climb as we wrap our minds around the future, but we spend time each day feeling grateful for the time we are given and the moments we can share. Thankfully, hospice has made her quite comfortable which gives her more time to spend with family and dear friends.

Surprisingly, this pretty much sums up everything that has happened between April and now. We have been going through the days and enjoying family and friends as much as possible. As much as I love blogging and writing, I love spending each second I can with loved ones and my sweet little girl even more. It may mean less updates and less time to hone my writing skills, but I know that all too soon I won't have the time to spend with my sister, and my daughter will end up in school (much too soon for my liking) so I cherish each moment I have now. I will try my best to keep you all updated more frequently, and thank you again for those who have reached out to me to make sure all is well. It amazes me how kind and wonderful my readers are, and I am sincerely grateful.

I hope everyone has a wonderful Christmas and very happy New Year if I don't manage to update before then! 

I'm still here!

Hi all,
Sorry for the massive gap between my posts! I have been relishing in mommyhood, and I have neglected my blog! Although my last post was in December, there really hasn't been much going on aside from staying inside due to the frigid/snowy winter and enduring a few bouts of illness.

Sydney is just over 11 months now, and she somehow keeps getting cuter and cuter each morning when I go to pick her up out of her crib! She says a few words (mama, dada, baba, lala, and good), crawls around the house like crazy and loves to laugh or make other people laugh.  Two months ago, she was fitted for a DOC band to correct her plagiocephaly (flattening of one side of the head) due to the torticollis she developed in utero. She wears it 23 hours a day, and she does great with it. She had facial and ear asymmetry so it was important that we pursued the band, and we are already seeing improvement! She also is still in physical therapy every week, but her range of motion has improved significantly!

Here she is in her little doc band!

As for my CF, things have been going pretty well. I have sadly missed a handful of treatments over the past 11 months, but I'm committed to regaining my 100% compliance streak. I am currently on Cipro to fight off a cold (which of course has traveled to my chest) I picked up from my daughter, and I'm hoping it kicks in soon because I'm tired of feeling miserable! On a positive note, my diabetes is in wonderful control! My A1c at last week's appointment was 5.7!! I'm pretty proud of that number!

As I start to have a much more rigid routine with Sydney, I am really hoping to get back into reading/commenting on other blogs. I have missed catching up with my CF friends, and I can't wait to find out what has been going on in their lives! This winter/spring has seemed incredibly difficult on our community, and I hope all of my cysters and fibros are doing well.

With that, I will end this post and go read some updates from friends! :)

A Letter to My (Almost) 7-Month-Old Daughter

My dearest Sydney,

It's been awhile, and I've missed a few months of letters to you, but today you are napping peacefully in your car seat after dropping Daddy off at work which means today I have time to write.

I'm not sure how time has flown by this quickly, and this is the first year in my life where it's two weeks before Christmas, and I don't feel like it should even be December yet. Life has been moving at a quick pace for awhile now, but since you were born time began flying at an exponentially fast speed.

Because of this, I find myself sneaking in extra cuddles and kisses, forgoing my dirty dishes and laundry, and just staring at you while you sleep. And you know what, that's okay. It's okay because you won't be little forever, and you have already changed so much since birth. If I had spent those precious  moments cleaning then I wouldn't have quite as many memories and photos. Children have a way of drastically changing one's priorities. That's a good thing.

In fact, I've been putting off my chores to cherish memories a bit more than normal in the last few weeks because you have begun to start wanting more and more independent time. You want to be on the floor, in your jumper, or sitting beside me on the couch rather than be cuddled in my arms. You still enjoy house tours and us carrying you, but you'd much prefer chewing on Sophie while lying on your stomach and staring at the Christmas tree.

My independent girl.

Your desire to do things on your own already blows me away. Feeding times are now you holding the bottle with your feet or hands (you still can't tip it up enough at the beginning which means we hold it for you, but it must be held discreetly or you will get upset that we are helping you) while you lie on the floor (because mom's arms just aren't a cool place to be anymore), and play time means less interaction with me and more interaction with your blocks, rings, and balls.

So when the time comes throughout the day when you start getting fussy, rubbing your eyes, and pulling on your ears, I run to you and swoop you into my arms eager to cuddle you close to my heart. I snuggle you into me, give you a pacifier, and watch as you stroke my shirt and drift into sleep. And I breathe. I breathe in your scent, and I feel my chest move slowly up and down as the comfort of having you near me overwhelms me.

Watching you transform from that cuddly newborn to an increasingly mobile and self-soothing infant is beautiful and hard all at the same time. I wish these snuggly days would last longer, but I so thoroughly enjoy watching you learn and grow. I have a sneaking suspicion that this feeling will forever stay as I continue to watch you change and develop into a beautiful young woman. So I live in the moment, and I enjoy those close times together as thoroughly as I can. I know they are fleeting so I grasp each one I can get. I believe you will be one of those little girls who must do it all on her own and simply doesn't have the time to cuddle with Mommy or Daddy too often.

But for today you are (almost) 7 months old. And at 7 months, I still get to cuddle and hold you throughout the day. I still feed you (sort of) bottles, and I still help you with sippy cups, grabbing toys, and eating food. So what are you doing at 7 months?

Well, we've covered that you like to feed yourself, but you are also sitting with complete control on your own. You catch yourself if you tip to the side or backward (most of the time), and you rarely cry if you fall over. As of last night, you pushed up on your hands and knees and began rocking in order to get to the wrapping paper rolls Mommy had left out on the ground. You succeeded in moving three feet to get them, and you threw a tantrum when I took you away. You are starting to really babble, and your favorite thing to say is "inga" over and over again. You will say "da da" occasionally when we ask you to, and sometimes we SWEAR it sounds like you say "I love you." You are currently sleeping in Mommy and Daddy's room more often than your own because of the pesky eczema which keeps you up and scratching throughout the night. Your favorite toys are Sophie the Giraffe, your links, and books. Oh do you love books. And your favorite food is carrots. At your 6 month appointment (about a week ago), you measured 26 1/2 inches and 14 pounds 4 ounces. You are growing like a weed, and we couldn't be happier.

I can hardly believe the changes you have made just in the last month, and I am so looking forward to the changes the New Year will bring. I'm imagining you will be almost crawling by Christmas, and that means I will probably lose even more cuddle time. That's okay though because you are doing just what you're supposed to do. I just hope you know that Mommy is always going to be here for those snuggles. Even when you're a grown adult.

I love you so much, baby girl!